Dear mom glaring at me in the ride line at the themepark:

Hi. You don’t know me and I don’t know you, but you are glaring at me and my children right now and seeing as we’re all confined to an itty-bitty tiny space in the ride line, I think I should say a few words to you (on my blog at least).

First of all, I can see that you are irked because we are in the ‘disability line’ of the ride that your angel has been standing in for the last 40 minutes. I get it. You’re tired. Your kid is tired. It’s hot. My kids look totally normal, so why do we get to cut to the front of the line?

The fact that my ‘special kid’ looks normal is a tribute to this disability line. Believe me, you would not want to be standing near us if we had to wait 45 minutes to ride this one minute ride! My daughter (one of my three with disabilities) has a genetic disorder very similar to autism and at three years old cannot stand in line. It may look like she is just a bratty kid throwing a fit when we attempt to do something like stand in a line, but in fact it is a sensory meltdown you would be guaranteed to observe. That meltdown would take us about one hour to get through. If we got through it at all.

Probably, she would go into meltdown mode and not be able to shake it because this theme park has so much sensory stimulation.

That is why we are in the disability line.

For her, at least.

So, why do her siblings get to tag along? Why can’t they stand in the regular line like all the other kids?

My six year old (typical) daughter summed it up perfectly. She calls their disability card the “Special Card” because, as she says, “We’re special and get to jump to the front of the line because of Ana and Grace!”

These siblings spend every day of their life doing damage control for their disabled sisters, fielding question and question about their sisters, standing in humiliation while their sisters meltdown or destroy something out in public, and are ostracized by other children at public playgrounds or museums or events because their sisters are different. They DESERVE a day to be special. Not just a day to be special but a day to enjoy an amusement park with sisters who are NOT melting down, destroying property, or otherwise causing a big scene.

So that, glaring lady, is precisely why we are over in the short line and your children are over in the long line. From the hot and humid place you are standing, it may not be fair even with my explanation, but consider this as my closing thought. You get to leave this park tonight with your typical kid and go back to your life with a typical kid where you never consider what your child can destroy when you walk in a store or someone’s house, where you don’t have to do your own safety-check of playgrounds and parks to make sure your kid won’t die in a very creative fashion, where you don’t go to ten therapy appointments a week and at least one official or unofficial school meeting a week, where you don’t have to search far and wide to find a qualified sitter to watch your children so you and your husband can go out to dinner once a year.

In fact, you probably never think about the things that dominate my life. Savor that. When you see my children rather than glare at me for being in the disability line, thank God for having kids that don’t qualify.

March 17 – Realization – Ana lives in the moment

Tajik orphans

Tajik orphans

This past weekend we visited family and had a four hour car ride to get there. Just me and five kids in my van for a VERY long time. This long car ride took place after a day at school to top it off. You can surely imagine the mood Ana was in.

To be honest, it started off well mainly because Ana was really excited about going. She loves visiting her grandparents! We have a standing rule now in the van that she is free to make her noises but only outside. That means if she begins the noises I pull over and let her out of the van to get the noises out of her system. So far, this system has been working great (as great as any plan works with Ana). On the four hour ride, however, the plan began to unravel.

Why?

1) It was a BEAUTIFUL day outside making standing outside not a punishment at all,

2) even thought I said it didn’t bother me, Ana knew there was no way that stopping the van on the interstate twenty plus times DIDN’T bother me,

and

3) she was angry about being stuck in the van and didn’t care about anything about ruining my afternoon as well.

DING DING DING! We have a winner!

I realized during about hour 3 that Ana was completely living in the moment. There I was thinking about the rest of the evening, the rest of the weekend, how we were going to go to dinner with my parents with Ana gone crazy, how I could punish her for this without really punishing her, and she was simply expressing her anger at being bored and trying to make me angry too.

It was that simple. No planning. No long game. Just pure manipulative in-the-moment Ana-ness.

So, I changed the rules.

I told her obviously she wanted to yell and I really wanted to get to where we were going so I was going to let her. Then, I gave the other kids headphones for their electronics, put on a favorite CD of mine and turned the speakers to the front and blasted it, and rolled down the window by Ana so the air blasted her and her screams.

At first, she screamed and screamed. But soon the combination of wind blowing in her open mouth and screaming made her throat sore (the crackers she ate as a snack helped as well) so after a short twenty minutes the noises came down to an acceptable level. But I didn’t stop my music or roll up the window. We continued the rest of the way just like that much to Ana’s chagrin.

What did I learn from this exercise?

I must not allow rules to be hard and fast. I must enjoy myself (genuinely) despite Ana’s behavior. I must keep her guessing as to my motives.

December 22 – Over the river and through the woods

What I like to imagine going to Grandma's house for Christmas looks like...

What I like to imagine going to Grandma’s house for Christmas looks like…

A weekend at Grandma’s house. Ahhhh, how relaxing and comfy. Unless you’re Ana.

Weekends anywhere are super stress inducing and quite often end in trips to the ER for sedatives. Thankfully, this weekend no hospital was necessary.

When we go anywhere Ana has to have some semblance of normalcy or she loses it immediately. At my parents’ house that is relatively easy since they live in a house, the same house they have been in since before I was born, making it the only Grandma house Ana has ever known. That is a great start to a survivable weekend.

Hotel rooms do not work for Ana. They are too small. There are too many people in them (seven in our family) and there are no clear definable spaces (i.e. kitchen, bedroom, living room). She needs all these things. So, whenever we travel we have to have a house or apartment. Or Grandma’s house.

The drive to and from Grandma’s is daunting. It is four hours not counting traffic which isn’t too awfully bad compared to Florida or some far away vacation hotspot. This time in an last minute spark of pure genius I stopped at the library to get some books on CD to listen to in the car. The other kids have a variety of devices to play but Ana is not into any of those which makes her a very bored girl (our mantra is ‘a bored Ana is a bad Ana’). The books on CD were a hit with all the kids so we travelled in relative peace. Even Ana was chuckling at a few parts in the story.

At Grandma’s house things got hoppin’ fast so Ana went along for the ride. We had lunch with extended family which kept everyone entertained and Ana enjoyed the attention. After lunch there were presents which are always a great way to keep Ana happy.

Later that evening we did Grandma and Grampa Christmas which was over the top, as usual, and Ana racked up some impressive gifts. To say the least Justice was well represented.

All during the day Saturday Ana was chilled out about seeing daddy (same city as Grandma and Grampa), but as Sunday night came around and no visit to daddy was in the works she began to talk about it. This combined with limited sleep (always a problem in a different bed than her own), junk food out the wazoo, and a lot of sensory overloading over the course of the weekend caused Ana to lose it.

Thankfully, my husband was with me for this trip so I wasn’t stuck with a meltdown-mode Ana and four other children (in similar states for similar reasons) all alone. We managed without her emergency sedative, but she will definitely need a few days recovery to get back to normal.